Best Practice Recommendations

In relation to the location and the people that are present, the Guidelines recommend that:
 

1.1 The diagnosis is given in a private place with no interruptions. The room in which this   takes place is:

• Quiet
• Free from interruptions
• Comfortable and user-friendly
• Available for the family to spend time in, absorbing the news after the consultation
• There is a kettle, phone, tissues, tea, coffee and water available
• Within the hospital setting there is a need for private rooms to be made available in both in-patient and out-patient settings. Ideally, the consultation does not take place in a room that the family will be using again such as the labour ward or ultrasound scanning room, as this may leave parents with a negative association with this room for the future.

1.2 The diagnosis is made verbally (not in writing) and in person (not over the phone).

1.3 Both parents are present when the diagnosis is given.

1.4 If it is only possible to have one parent present, the option is given to have another family member or friend present to provide support.

1.5 When a parent hears the news alone, arrangements are made as soon as possible to inform the other parent and close family members.

1.6 If the parents are very young, it may be appropriate to invite extended family members such as grandparents as support for the parents.

1.7 The news is given by an appropriately trained staff member who is responsible for delivering and confirming the diagnosis.

1.8 A second professional, preferably known to the family, is present and remains to support thefamily after the initial disclosure.

1.9 The number of professionals present is limited and does not greatly outnumber the family members.

1.10 No extra staff are present purely for training purposes. (Any staff members in training that are present should also have a role in providing further care to the family).

1.11 If the news of a child’s disability is given close to the time of birth, it is important that the parents have seen the baby before the diagnosis is given, and if at all possible the parents are given the opportunity to spend some time with the baby before any disclosure takes place. This can facilitate the parents in identifying with their infant as a child first and the disability as secondary.

1.12 It is critical that the parents can see the baby when they are being prepared for difficult news. (This is necessary to avoid any misunderstandings that may lead to assumptions that the child has died.) If the baby cannot be present, the parents should first be sensitively reassured that the difficult news to be imparted does not mean that their child has died or is dying.
 

1.13 If a baby is being cared for  in the intensive care unit, the parents are facilitated to visit as soon as possible after the diagnosis is given, including facilitating a mother who herself may be recovering from surgery such as a Caesarean section.

1.14 Unless the diagnosis takes place close to the time of birth, it is not recommended that the child should be present for the disclosure, so that the parents have an opportunity to absorb the news and express their emotions.

1.15 Parents are given time alone together to absorb the news in private, if they wish. They are made aware that there is a staff member they can contact for support at any time.

1.16 Whilst respecting the parents’ need for privacy it is also important to ensure that the parents are not isolated after being given the diagnosis – if parents wish, a staff member should engage with them at this time to sit and spend time with them.
 

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